What does this mean for me?
"Learning about it made it less scary"
"It took a while to really understand what this means"
"I learned the importance of paying attention to the changes in how you feel"
The onset of chronic kidney disease and the possible need for dialysis frequently disrupts personal and family lifestyles. It may also impose changes accompanied by new or unexpected stress.
When you learn that you have chronic kidney disease or require dialysis you may feel overwhelmed with the practical and emotional impact on you and your family. Common emotional reactions are:
- Denial or avoidance
- Low mood/depression (clicking on this link will take you a self-assessment tool
"Even though I knew for many years, it still came as shock to be told I needed dialysis"
"You’ve got to get on with your life"
It is a normal part of adjusting to the changes in your health and body to feel these emotions. If you are increasingly overwhelmed by these emotions, please share your struggles with a member of your team. There are supports available to assist you in this life changing journey.
You and your family are not alone--your inter-professional team consists of:
- Nurse Practitioners
- Social workers
"Findiong out my husband's Kidneys were failing"
You might be asking yourself: “what do I do now?” Or “how do I move forward?”
We believe that a good understanding of this illness and what you might expect can help to reduce your stress and anxiety as well as help you to feel more in control of your health. We hope that this website might be a tool to help you feel empowered to be an active part of your health care team. Read on to find out how self-management and decision support are key ways that you can feel the best about your kidney condition and your care.
"The diagnosis changes your thinking"
The Chronic Kidney Disease "Prep" Clinic
As part of your chronic kidney disease care, you will be given a one time appointment to meet with the multidisciplinary team at the ‘Prep Clinic’. This clinic takes place at the Kidney Care Centre, Westmount Shopping Centre location of LHSC. Your nephrologist will refer you to this clinic when he or she feels it is appropriate.
Your nephrologist will not be present at this visit. At this appointment you will meet each member of the team and learn what their roles are, and how they can assist you with your health care needs. It is also an opportunity for the team to assess and determine how best to help you at your CKD clinic visits.
The goal of this clinic visit is to provide you with information to develop or improve your health care self management skills, valuable for keeping the kidneys working for as long as possible.
Patients who have attended the Prep clinic tell us they feel supported by the team, get a jump start on learning about self management skills, and a better understanding of what chronic kidney disease is all about.
Education and Support
A few resources for Education and Support about Kidney Disease are as follows. Also, refer to the ‘Further Support’ section for more resources.
- At the Kidney Care Centre, we offer scheduled education sessions each month. These sessions are designed to give you tools to understand your disease and learn the best ways to manage your health.
"The education sessions made a difference"
- Drop-in at our patient-led support group, held on a monthly basis. The Kidney Connect Peer Support Group program provides an opportunity for people affected by kidney disease to talk to others who have been there too. Patients facilitate all of the groups, with the support of the LHSC Renal Program and the Kidney Foundation. The patient volunteers have been especially trained as mentors for people with kidney disease and their families and friends.
- The Kidney Foundation of Canada is a community resource available to you. The Kidney Foundation provides:
- Education and information,
- Peer support and
- Some financial assistance
The Fresenius Medical Care is an American renal resource offering information on the emotional impact of kidney disease and dialysis.
There are further community resources to assist you in coping with the complex stressors that are related to your kidney disease. If you need assistance accessing community resources such as: in-home support; meals; financial assistance; drug coverage; transportation; counseling services and so on, please contact your renal social worker.